It’s a major problem – because the way that needs are described can make the difference between a person receiving the funding or not.

So what can you do if a Continuing Healthcare assessor is trying to play down your relative’ needs?

Read on for 3 helpful examples – plus some tips…

Families often have to argue hard to get some assessors to properly record the severity of need in each care domain. (The care domains are the categories of need assessed during the Continuing Healthcare assessment process.)

1) “Assistance”

Let’s think about the physical and/or cognitive ability a person may or may not have to dress and wash themselves.

Let’s call this person Mrs X and assume she matches one of these two descriptions:

She has a degree of dementia that makes her incapable of making any practical decisions for herself or indeed doing anything for herself.

or…

She’s had a major stroke that has left her severely physically disabled and unable to do anything for herself.

In Continuing Healthcare assessment notes for Mrs X’s needs, it would not be unusual to see the phrase: “Washes and dresses herself with assistance”.

Of course, the family knows that’s not quite right, but it just seems to be how things are described in Continuing Healthcare – and so it can go unchallenged.

Then of course, a CCG decision making panel reads those words and concludes that Mrs X’s needs really aren’t that great – and the decision is: no funding.

That’s a very simplistic way of looking at it, but it highlights the point.

The phrases “Needs supervision with washing and dressing” and “Needs assistance to wash and dress herself” are also very common – and again they do nothing to paint an accurate picture of the nature and extent of Mrs X’s actual needs.

“Cannot wash or dress herself without assistance” is slightly better, but it still implies Mrs X can help in the process in some way – which is unlikely.

More accurate is something like this:

“Mrs X needs constant care, day and night, for even the most basic things such as getting clothes on, maintaining vital oral health and protecting her skin from the impact of poor hygiene. She is unable to carry out even the most basic tasks for herself – in any way. Without such care and intervention, Mrx X would suffer painful injury, distress and potentially fatal skin breakdown.”

For someone with Mrs X’s needs this is an absolute minimum in the care that is required.

2) “A delight”

Another phrase we’ve seen in assessment notes is “Mrs X is a delight to look after.”

Not only is this wholly subjective on the part of whoever may find Mrs X a delight to look after, but it says absolutely nothing about Mrs X’s care needs.

Instead it implies that Mrs X’s needs are really not that great and everyone’s just having a pretty easy time.

This of course is rarely the case. And so the same thing can happen – the language used in the assessment notes contributes to the overall playing down of care needs.

And the result? No funding.

3) “Independent”

A further example of misleading language in care notes can be seen in phrases like: “Mrs X is very independent.”

We’ve seen this written about someone whose behaviour is extremely challenging, on account of the severity of their dementia. The person would rarely let care staff even touch them or provide the vital care they needed. This was not because the person needing care could actually perform the tasks themselves; it was, of course, because of their cognitive impairment.

And so describing them as ‘independent’ completely negates the degree of need here – and is likely to stop them receiving a ‘Severe’ or ‘Priority’ score in the Behaviour domain.

It is also hugely disrespectful towards a person needing care when assessors try to brush the person’s serious needs under a carpet of positive language.

Part of the purpose of the NHS Continuing Healthcare assessment process is also to flag up actual care requirements, and any attempt to play these down puts the person needing care at increased risk of neglect.

What can you do if Continuing Healthcare assessors describe care needs wrongly?

All of the above issues are of course often further compounded by the following:

many care staff don’t have time to record proper care notes; in addition, many are not trained in any way to understand why the care notes are critical to the Continuing Healthcare process;

families report that, in may cases, the actual assessors don’t have appropriate qualifications in the actual health issues they’re assessing.

In addition, always ask an assessor what makes them personally qualified to assess your relative’s care needs. Do they have specific medical, nursing and/or care knowledge and experience to do so? What is their specific expertise?

The National Framework on page 74 paragraph 30.2 states:

“Whilst as a minimum requirement a Multidisciplinary Team (MDT) can comprise two professionals from different healthcare professions, the Framework makes it clear that the MDT should usually include both health and social care professionals, who are knowledgeable about the individual’s health and social care needs.”

Note the word ‘individual’ too. It’s not acceptable for an assessor to have just a bit of knowledge about a broad health issue; instead, they must have appropriate knowledge about your relative’s specific needs.

Challenge them about anything and everything that doesn’t seem right in the way they’re recording needs.

Insist that they include in the notes your own objections to what they’re writing.

There is a section on page 18 of the Decision Support Tool (the form used in the full assessment for NHS Continuing Healthcare) that allows the family to add comments about the assessment. It’s headed:

“Individual’s view of their care needs and whether they consider that the multidisciplinary assessment accurately reflects these:”

If you feel that the notes made by the assessor(s) do not accurately reflect your relative’s needs, be sure to write that on that page – and use additional paper if needed. This is particularly important if an assessor refuses to note your own comments in the individual domains.

Read more about the language used in NHS Continuing Healthcare assessments:

39 Comments

Vanessa – you mentioned for Juliet’s comments to be included before the Multidisciplinary Team meeting? Are you suggesting that we should write to them with what we believe our relative’s needs are, including complexity, intensity, etc ? And any other medical records to add weight to our case. I recently discovered mum admitted to Hospital in 2004 and they kept her in for 3 was even though they wanted to discharge her I believe as they mentioned schizophrenia and knew she lived alone they kept her in longer. Surely this adds to fact she had a problem before she went to care home 3 yrs later. . Hospital aftercare? She didn’t get better mentally and always needed to be kept an eye on by Community Psychiatric Nurse who couldn’t always get access to her

My mum passed away 29 months ago and I am still fighting her case. It became too much stress, so have paid a firm to deal with it. Please do not believe anything you are told without querying and considering. I was told so many lies it is unbelievable. You need to read everything and consider yourself what is a fair assessment for your relative. If you are not happy then challenge. Keep copies of all forms, letters, documents etc. I found it helpful to pay £50 for my mum’s hospital records for the 9 months she spent mostly in hospital. The hospital notes stated a Best Case Decision may need to be made and confirmed that mum was transported from hospital by ambulance on a stretcher. The nurse assessor stated in her report that my mum walked around the garden of the Care Home. I would never have believed so many lies could be put in a professional report. Sadly in order to win you need to review everything and if not happy dispute it. Do not say something is not worth challenging. If it is not correct then challenge it in order to make your case. Do not let anything slip past unchallenged.

Hi, I wonder if you can help. You say the Multidisciplinary Team should usually include both health and social care professionals, who are knowledgeable about the individual’s health and social care needs. What happens if the individual’s conditions are very rare [ one is in the top ten list of rare diseases] How does this work? We already provide the nursing home and GP with info on it.

P.Harden,
It is the effects of the health problem(s) that are relevant. Diagnosis, while useful to establish the illness and to indicate a need, is not the basis of the Continuing Healthcare (CHC) assessment process. Although any prognosis associated with the diagnosis is entirely relevant because it has a bearing on future needs that could/should be anticipated by the Multidisciplinary Team (MDT) during assessments.
NEEDS are all that are assessed. They are expected to display Intensity and/or Complexity and/or Unpredictability and/or All and/or as well as any requirements for continuity of care.
I suggest that you look at the Decision Support Tool domain descriptors and then list the needs that match any of the wording within the domains.
A MDT can comprise two differing health care professionals but it is more usual to include a social services rep’. According to the fuzzy but nonetheless explanatory wording in the National Framework, the need for social services attendance becomes mandatory when there is any attempt to remove existing CHC funding. (e.g. There is a requirement for a crucial face to face discussion (at the MDT stage) if funding is to be withdrawn).

Thanks to Angela and Chris G. Chris you mention prognosis, as one of the conditions is so rare we only know that it is life limiting. Every one is different regards some of the symptoms. You can deteriate at a slow medium or fast rate or any of these at different times. Some people with it don’t have many symptoms over years. They have had a review and they now do not have a health need so a full Decision Support Tool (DST) is to be done. This will be the 2nd DST in 3 years and they have had funding since end of 2011. the review was carried out by a outside company. the full DST will be carried out we have been told by a person who has never meet them and not the one in the local area, who has knowledge of them.

My son has turned 18. He was receiving Childrens Continuing Care until December 2016 when he had his annual review under the new government criteria and we were told he no longer meets the criteria. We appealed and lost but have managed to keep the service til July. We have a meeting tomorrow with his social worker, children’s continuing care nurse manager and a verifier from the CCG. We have been told the meeting may last 3 hours. The reports are in. My son has about 100 tonic clinic seizures a month, no speech, severe learning wears pads, is doubly incontinent, relies on food, drink and meds through a gastrostomy. Is a meeting to complete the decision making tool usual?

Jules, you need to be at any assessment. Once your son turned 18, I would imagine that needs would be even more complex intense and/or unpredictable solely because his rights increase. What you need to be doing is looking at every facet of each need and describe it in minute detail at assessments. The number of carers , why, resistance, how long, why, what is outcome if delayed/postponed, why. Etc…… That is the only way to ensure that complex needs will be accepted as complex etc. Then don’t be surprised when they refuse funding. At least you will have a complex Decision Support Tool that describes complex needs to go to appeals with. Good luck.

My relative applied for Continuing Healthcare (CHC) but was rejected at the first Multidisciplinary Team assessment. We appealed. By the appeal stage he had worsened and two domains were put at a higher level. Still he was denied despite being unable to do anything for himself eg wash,dress,toilet,eat,communicate. The care home notes said he was “assisted” with eating and dressing. They accepted this was not true as he has to be dressed and fed but said they put it like this for the dignity of the patient! As I argued the patient couldn’t read and it was being fed etc as a result of his condition that was undignified!! I believe the home was complicit in him being denied CHC because they would get less money from the NHS than from his wife having to top up the local authority amount.
Eight days before he died we were told he was not going to die within three months and that his decline had not been rapid enough to qualify for fast track even though he could no longer swallow. The GP phoned two days later and he was fast tracked. He died six days later and received six days of CHC funding.

My wife Mary has Huntington’s Disease and (thanks to reading Angela’s book twice!) was awarded Continuing Healthcare (CHC) last year. The CCG now want to do an annual review and have sent me CHC 24 hour activity sheets to be completed over seven continuous days. The CCG are asking for as much detail as possible about the care given in order to meet my wife’s individual health, social and wellbeing needs, during the week.
The care firm send two carers four times daily and the ladies are kind, gentle and generally do a good job. My concern is that those who attend Mary fall into two groups: (1) British but with a poor level of education as evidenced by the quality of the report sheets they are obliged to complete, and the language they use. (This sounds very subjective but this is how they appear to me, a retired teacher)
(2)The second group, non British, behave in a much more professional manner and are better educated but have difficulty in communicating as they are fairly new to the UK and learning the language.
I am worried that the carers will not be capable of completing these activity sheets properly to the detriment of my wife’s review. Am I right to be worried?

John. Do what my dad has done for seven years. Keep your own comprehensive even nit picking diaries. Note times and numbers of people involved including you. Add extra pages if required just remember to date and time them. If you have regular process write it down in minute detail. Then refer to it each and every time it is undertaken….. e.g. Imagine making a cup of tea. Every detail down to washing up the cup afterwards…… Apply the same logic to a bed bath with a perhaps resistive or uncognizant patient…… You get what I mean?….. At Independent Review Panel appeals, diary entries of that nature were the key to swaying the panel, once they had been persuaded that they had more relevance than hurried generic note writing and box ticking.

My Mum has mixed dementia and has been in Hospital for 3 weeks after collapsing at home. She’s been placed under a Deprivation of Liberty Safeguard (DoLS) and has tried to get out of the ward on a number of occasions. The Discharge Team have stated that they have carried out a Continuing Healthcare (CHC) assessment and she doesn’t qualify for NHS funding. I asked for a copy and they haven’t​ yet provided​ me with one. Her condition has worsened since going into Hospital, and we are now at the stage where a care home seems the best option. She has no assets so is not able to self fund. Is it still worth challenging the CHC decision? We want to do what’s best for her, but it’s a minefield and I feel woefully out of my depth.

If you are sure she can get the right level of care through the LA then probably not as the stress of fighting can be immense IMHO. Def worth looking at scoring on Continuing Healthcare, watch out for top ups etc.

If challenging the CCG try to get head of LA to do the running as it is the Local Authority (LA) who will now foot the bill instead of the NHS rarely interested if self-funding but given budgets should take a lively interest it is the LA who decide if one side of legal limit or not.

Hi Richard, thanks so much for the advice – particularly around the Top-Ups. I spoke to the PALS service in the Hospital today and by some ‘happy miracle’ the Continuing Healthcare (CHC) assessment report arrived 20 minutes later! However, someone has been back through the report and marked Mum from an A down to a B on her ‘Communication’ criteria and on the ‘Rationale for Decision’ she was initially recommended for a DST as she scored 2 x A’s and 2 x B’s – this has now been amended to say ‘on review, patient doesn’t screen in for full CHC assessment as Communication domain reviewed and amended’!!! She has vascular dementia and her speech and ability to reason is worse now than when she was admitted!!! Needless to say, I will challenge this and ask for another assessment to be carried out – which I believe I am entitled to do. I have also just received a full report on the justification for her Deprivation of Liberty Safeguard which supports the belief that she does need medical and nursing supervision and intervention – so I feel that we have good evidence to challenge this decision – we shall see. Thanks again – this website is helping us so much.

They are NOT allowed to alter the desision on people the meeting has been held, they are acting unlawfully. The National Framework clearly states the rules around the meet.. you have an absolute right to demand the original scores to be instated.. get your GP involved
I hope you succeed
Julia

Challenge and ask why you were not invited to attend the assessment, you can demand that it is repeated with you, & your Mum, if possible… read the National Framework and KNOW the important sections. Write to the person who carried out the assessment demanding a copy of the “handwritten ” notes from their meeting and any evidence that he hey were/are relying on.
Ask for the assessors specific qualifications relating to your mother and find out if her GP was invited to attend… tell them you will take the matter to the press if they continue to ignore your very reasonable requests

Tracey, don’t let them make you believe that a Deprivation of Liberty Safeguard (DoLS) is irrelevant. How can care not be complex intense and/or unpredictable if someone needs their liberty removed, so that it can be provided? There again, the reasons why a council can provide care is that the need for accommodation is ancillary to the need for care…… How does anyone deny liberty without somewhere to keep the person? How then can that somewhere be ancillary? How then can the NHS transfer care to a council or force someone to self fund under the shelter of social services?

Can I just ask, my father is very aggressive on intervention and physically attacks the carers when I have said at Multidisciplinary Team meetings about his behaviour should be severe they disagree saying the carers should walk away and go back later; how can you leave a 98 year-old man with advanced dementia without care? I am going to try for another Checklist to be done. He has deteriorated so much and lost a vast amount of weight has puréed food has thickened drinks. The GP has taken him of all meds now as he refuses to take them, they did give them covertly but as he stopped eating they were not working any way, his GP told me it’s basically palliative care for him now. He is not mobile has to be hoisted when moved. He does self-fund. Any comments would be most helpful.

From the Multidisciplinary Team perspective it’s not about what the carers should or shouldn’t do, its about your dad’s needs!
Clearly he needs the care they are there to provide if his behaviour is so severe it stops him getting it then the case would appear to be made.

The LA/NHS have a duty of care to meet those needs on the face of it severe would be a reasonable push back to the CCG. The Pointon case is worth a look at in this context..

Try to write a chronology of events, hospital input, GP input, dates of when certain behaviour happened and it’s severity.
Even if a need is seen to be managed it is STILL a need, these people circle their wagons.
If you are well prepared and have read carefully the National Framework, they will have great difficulty denying you.
You will find that if you learn the important sections and have read your fathers notes, if he has no capacity, you are his advocate and you have a right, if you have power of attorney, for health,you entitled to view all records.
I did exactly that and won first time.. we have a review on June 9th, they haven’t reviewed for 2 years, I suggested to bullying assessor on the phone, that they had left it, hoping he’d improve, but has just become much more ill… I have another fight , but I’m giving in.. I Won’t smell grannies cookies..
You should also request a copy of the notes to be copied and put in your hand before you leave any of these meetings as some of the scores get changed later by the assessors and funding is refused..some advice I was given was to ask at the top of the meeting what the personal qualifications and experience makes the Multidisciplinary Team (MDT) or appeal panel members appropriate to the specific needs of you Dad.. good luck, Julia

Jean requiring this action of carers would need someone to observe for a longer period than it would take to provide the no doubt already minimised need … Thereby making the need more intense. The aggression is challenging behaviour and that, if described in enough detail, is usually grounds for a severe level and an appeal if it is refused.

For my mothers retrospective review, the Decision Support Tool (DST) has been changed twice and despite providing the local panel with rewritten care domains, all evidenced, the local panel still referred to the DST when commenting on the key factors (nature, intensity, complexity etc) in their report. They also wrote that my late mother suffered discomfort despite suffering severe pain of which she was prescribed the strongest painkiller available. It does not matter what the care needs are or how severe, they will find a way of denying funding. They admitted to not obtaining medical records from 2 hosp and not yet admitted to relying on GP notes from the care home instead of obtaining proper notes from my mothers GP practice. How do I know? Because I checked and was told there had been no attempts to obtain these records!!!!

Appeal and if the loss sorry, of cash is sufficient then a court challenge via lawyers is still an option. However, look at the needs and break them down into the constituent parts on paper and then look how long your version of the Decision Support Tool would be. Then consider just how complex, intense and/or unpredictable they truly are….. All needs mind. Don’t swallow any nonsense about some needs only being of daily care etc…… Consider how hard it is to be let out of hospital if home care is lacking………. And yet most people going home have cognition and communication skills enough to ask for care and still have the ability to do most things for themselves, but still the hospital will attempt to keep a patient that cannot demonstrate suitable provision at home.

Like Jackie I can also relate similar experience during Continuing Healthcare (CHC) Decision Support Tool meeting for my wife. I have to challenge the team to change each and every inaccurate statement about the care needs of my wife. Thankfully they have agreed for CHC eligibility. My wife is now in a Nursing Home. I have been told that a Nurse assessor will come alone to do a three months review. She said she will do this with care home manager and then let me know. I would appreciate if somebody who has gone through this review guided me. What should I do? Do I need to be there from the beginning? Please help me.

Kalyan, insist that you are present when the Nurse Assessor does her 3 month review. Read as much as you can on this very useful website, take a look at the 11 different domain categories that will be assessed and see where your wife fits ie if she has severe, high, moderate, or no needs by comparing the necessary requirements. Always be present at any assessment and ask to be copied in on any paperwork so that you can make your comments every step of the way if you disagree with their comments. I have been sorting out my Mother’s NHS Continuing Healthcare (CHC) since 2012 and it is still ongoing, she died in 2013, but I am determined to go to the end of the earth to prove she had a primary healthcare need and therefore should have received NHS CHC. Make sure the Nurse assessor and the CCG know that you are not prepared to be walked over and good luck.

Like Vanessa I agree. You should attend all assessments including the sneaky unplanned visits, (I was just passing etc… ). If they do that then challenge it. However, look at the existing Decision Support Tool, you should have a copy, and expand on the needs described if they are still relevant. Add new observations too. Detail is key. You are trying to get intensity,complexity, and/or unpredictability down on paper and that applies to all needs, not just those that appear as medical needs.

I can fully identify with this article. When reading the assessment of my mother so many incorrect statements were included it felt picky on my part to challenge everything. The whole report appeared to relate to someone I did not know. The process took so long that my mum passed away two days before the assessment was due. Luckily when I rang the social worker to tell her mum had passed away she said it may still be possible to obtain funding. When the Assessment eventually took place I was informed no social worker need take part. The social worker is named in the Report and when I reported this to her she said I should dispute it, which I have done several times but her name is still there. Staff involved in such assessments are always friendly and “appear” helpful. This I have found to be suspect. It simply makes it harder to dispute their statements.

My father suffers from vascular dementia and is in a nursing home bedridden and completely unable to do anything for himself, he sleeps most of the day, cannot walk or even turn over in bed, he cannot eat or drink unaided and his fluids have to be thickened so that he does not choke. He has lost a vast amount of weight and is now shockingly skeletal. He scored 4 As, 3 Bs and 4 Cs on the initial Continuing Healthcare (CHC) assessment but when the Multidisciplinary Team (MDT) did their assessment he did not qualify for funding as we were told he didn’t need any medical treatment, i.e, injections or anything. They said if he deteriated he might qualify in the future. The only way he could deteriorate is if he stopped breathing as that is all he can do for himself. Is it correct that even if someone needs 24 hour care unless they have a specific medical need they do not qualify?

Sue, I’m not an expert, but what the CCG have told you is absolute rubbish. Your Father does not require injections or specific medical treatment to qualify for NHS Continuing Healthcare, he simply needs to score highly in the 11 different domains. If I were you, insist they provide you with your Father’s scorings in the Decision Support Tool (DST) and get them to explain why he did not qualify. You should have the opportunity to comment on their Needs Portrayal Document and have your comments included BEFORE the Multidisciplinary Team look at the DST and make their recommendation to the CCG. I would definitely insist on a review of their decision and ask for all the paperwork of any assessments that have taken place so far and insist that you are present in any further assessments. Good luck.

I would like to flag up that I was invited to a “meeting” regarding my Mum. Nobody would tell me what the meeting was called; no one would supply an agenda. In the end I myself sent round an agenda to make sure my concerns ‘re my Mums Care were timetabled. It turned out that the meeting was called to accuse me of unruly behaviour whilst visiting my Mum. This would be insisting they helped her when she had eaten feces for example. They refused because this behaviour was not in her transfer notes. In time it transpired that this meeting was classed as a review of my Mums nursing funding by the CCG. At no point was my Mums nursing funding mentioned at the meeting. No notes were produced from the meeting although I requested them. Please be warned.

Sue I would challenge the statement that he does not need medical treatment. If they did not turn him or wash him, feed him and thicken his drinks then he would develop bed sores, lose even more weight. Also as Vanessa said he does not need specific medical treatment to qualify. Or a specified medical need…hope this helps. Perhaps the GP could do a fast track for him. You don’t need a Decision Support Tool, just the form filled in and the CCG have to accept it with in 48 hours .

“The reasons given for a decision on eligibility should NOT be based on the:
a. person’sdiagnosis;
b. setting of care;
c. ability of the care provider to manage care;
d. use (or not) of NHS-employed staff to provide care;
e. need for/presence of ‘specialist staff’ in care delivery;
f. the fact that a need is well managed;
g. the existence of other NHS-funded care; or
h. any other input-related (rather than needs-related) rationale.”

My mother has had three strokes. The nurse assessor came alone. There was no social worker. The manager and I stated that my mother was breathless. The manager felt her needs were high , but the nurse assessor ticked low. I’m appalled as this is the second time we’ve gone through a Decision Support Tool. My mother is unable to feed herself, nor dress herself , nor say a full sentence. It is worth noting that my mother self funds and pays double that of Social Services residents.

Juliet, insist that any paperwork of the assessment is provided to you, so that you can make your comments back to the CCG. All 11 health care domains should have been assessed and a level of need given for each domain, when you have received their Decision Support Document or Needs Portrayal Document, you can compare what they have said with the truth and you can insist that your comments are INCLUDED BEFORE the Multidisciplinary Team meet and make a recommendation of funding to the CCG. Too many people are just fobbed off with inadequate assessments and poor administration, they need to prove that your Mother is not above the level of need that the Social Services/Local Authority can legally provide, otherwise they are breaking the law. Good luck don’t give up, and let them know you mean business.

My mother is in a similar situation not able to walk or weight bear , now in a wheelchair, can’t communicate or dress or wash herself , doubly incontinent and has suffered with mental illness for over 40yrs. She was on an anti psychotic drug before she went into care home over 10yrs ago, which they stopped a couple of years ago after she had a TIA . Of course as mum cannot speak (only babble like a baby occasionally), so how do they know she isn’t suffering hallucinations or other disturbing thoughts even though suffering severe dementia? Am waiting for Decision Support Tool but like so many say in their comments they try to insist there isn’t a health need as not diabetic etc.
Any suggestions?

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